Evidence map›Paper›PMID 33292683›Full record

ArticleResearch involvement and engagement2020

Engaging patients and family members to design and implement patient-centered kidney disease research.

Teri Browne, Amy Swoboda, Patti L Ephraim, Katina Lang-Lindsey, Jamie A Green, Felicia Hill-Briggs, George L Jackson, Suzanne Ruff, Lana Schmidt, Peter Woods and 6 more

Registry-linked trialOpen access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Research involvement and engagement, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02722382 (Putting Patients at the Center of Kidney Care Transitions), which is not on this map. Cited by 15 papers.

0numbers the graph read from it
0cells of the map it votes in
15citing papers in PubMed
4.6field-weighted citation impact, top 5% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT02722382 nacompletednot on this map

Putting Patients at the Center of Kidney Care Transitions

TypeinterventionalSponsorDuke UniversityRan2017 to 2020Enrolled1,572ConditionsChronic Kidney DiseaseArmsPatient-Centered Kidney Transitions Care
3 · Its place in the literature

Who cites it

15 citing papers in PubMed, 28 citations in OpenAlex.

  1. Review
  2. Article
  3. Article
  4. Article
  5. 'ALL ABOUT MY IDEAL MENTAL HEALTH SERVICE': Users, family members and experts by experience discussing a co-designed service.Health expectations : an international journal of public participation in health care and health policy · 2024
    Article
  6. Delivering Digital Health Solutions that Patients Need: A Call to Action.Therapeutic innovation & regulatory science · 2024
    Article
  7. Article
  8. Review
  9. The dynamic nature of patient engagement within a Canadian patient-oriented kidney health research network: Perspectives of researchers and patient partners.Health expectations : an international journal of public participation in health care and health policy · 2023
    Article
  10. Review
  11. Article
  12. Review
  13. Patient-centred clinical trial design.Nature reviews. Nephrology · 2022
    Review
  14. Article
  15. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

16 authors at 8 institutions in 1 country.

Teri BrowneCollege of Social Work, University of South Carolina, Columbia, SC, USA.
Amy SwobodaFamily member co-author, Edgewater, MD, USA.
Patti L EphraimDepartment of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
Katina Lang-LindseyPresent address: Alabama Agriculture & Mechanical University, Huntsville, AL, USA.
Jamie A GreenDepartment of Nephrology, Geisinger Commonwealth School of Medicine, Danville, PA, USA.
Felicia Hill-BriggsDivision of General Internal Medicine, Johns Hopkins University, Baltimore, MD, USA.
George L JacksonDivision of General Internal Medicine, Duke University School of Medicine, 200 Morris Street, 3rd floor, Durham, NC, 27701, USA.
Suzanne RuffFamily member co-author, Mooresville, NC, USA.
Lana SchmidtPatient co-author, Liberty, IL, USA.
Peter WoodsPatient co-author, Hartsdale, NY, USA.
Patty DanielsonPatient co-author, Portland, OR, USA.
Shakur BoldenPatient co-author, Jacksonsville, FL, USA.
Brian BankesPatient co-author, Bloomsburg, PA, USA.
Chelsie HauerCenter for Clinical Innovation, Institute for Advanced Application, Geisinger, Danville, PA, USA.
Tara StrigoDivision of General Internal Medicine, Duke University School of Medicine, 200 Morris Street, 3rd floor, Durham, NC, 27701, USA.
L Ebony BoulwareDivision of General Internal Medicine, Duke University School of Medicine, 200 Morris Street, 3rd floor, Durham, NC, 27701, USA. ebony.boulware@duke.edu.ORCID http://orcid.org/0000-0002-8650-4212
Duke University · USJohns Hopkins University · USAlabama Agricultural and Mechanical University · USBloomsburg University · USChesapeake Research Consortium · USGeisinger Neuroscience Institute · USUniversity of South Carolina · USWestchester Community Foundation · US

Funding

Patient-Centered Outcomes Research Institute IHS-1409-20967
6 · The paper itself

Abstract

We need more research projects that partner and engage with patients and family members as team members. Doing this requires that patients and family members set research priorities and fully participate in research teams. Models for this patient and family member engagement as research partners can help increase patient centered outcomes research. In this article, we describe how we have successfully engaged patients with kidney disease and family members as Co-Investigators on a 5-year research project testing a health system intervention to improve kidney disease care. Background This article describes a method for successful engagement of patients and family members in all stages of a 5-year comparative effectiveness research trial to improve transitions of care for patients from chronic kidney disease to end-stage kidney disease. Methods This project utilized the Patient-Centered Outcomes Research Institute's conceptual model for engagement with patients and family members. We conducted a qualitative analysis of grant planning meetings to determine patient and family member Co-Investigators' priorities for research and to include these engagement efforts in the research design. Patient and family member Co-Investigators partnered in writing this paper. Results Patients and family members were successfully engaged in remote and in-person meetings to contribute actively to research planning and implementation stages. Three patient-centered themes emerged from our data related to engagement that informed our research plan: kidney disease treatment decision-making, care transitions from chronic to end-stage kidney disease, and patient-centered outcomes. Conclusions The model we have employed represents a new paradigm for kidney disease research in the United States, with patients and family members engaged as full research partners. As a result, the study tests an intervention that directly responds to their needs, and it prioritizes the collection of outcomes data most relevant to patient and family member Co-Investigators. Trial registration NCT02722382 .

Indexed as

Care transitionsFamily member research partnersKidney diseaseOutcomesPatient and public involvementPatient centeredPatient research partnersPCORIShared decision-making

Identifiers

PMID33292683
PMCPMC7604920
OpenAlexW3097249393

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.